Marcia Russell

Some 20 years ago, I picked up the phone extension in the woolshed office and the person on the other end introduced herself as Marcia Russell.  I knew I knew that name from somewhere; surely this was the editor of “Thursday” magazine.  But why was she ringing me?  “I have a daughter”, she said, “who was recently diagnosed as having Prader-Willi syndrome by the mother of another girl with PWS, standing at the counter of a shop in town.  I just need to talk.”  A good hour later, I felt as though I’d found a kindred spirit.  Although Kate was a few years older than my daughter, Francie, what Marcia and Tom had gone through rang so many bells that it could have been orchestrated.   

This was the beginning of a long friendship, founded on PWS, but built by each of us into a strong relationship.  I have always felt lucky to know Marcia – for a start, she was a strong role model for all of us growing up in the 60s; her vibrancy, great sense of humour, her verbal skill, her ability to quickly grasp a situation, to sort the wheat from the chaff, is a rare find.  It wasn’t long before I asked her if she would be part of the PWS Association that I was struggling to form.  So many parents whose children had PWS were simply unable to commit to anything else but trying to grapple with their own situation.  But Marcia had enough energy and drive to do both and for many years she was a strong member of the Association’s Board.  She knew and understood the limitations of the syndrome, the difficulties faced by parents and families, the issues in confronting disbelieving professionals, and was able to educate and inform and support others.   She, and Tom, attended conferences, met with, and also hosted specialists of the syndrome

When Kate went to  Salisbury School for Girls in Richmond, Nelson, Marcia took a seat on the board and became Chair.  Her ability to lead the board was exemplary and she guided Salisbury through some difficult times.  I know this from firsthand experience as I also joined the board as our daughters progressed their way through the school. 

Marcia’s loyalty as a friend could never be doubted.  Her loyalty to our New Zealand PW Association was always strong and she brought wisdom, wit, and compassion to her job.   In those days when I was often struggling to run the Association, I could always rely on her to hear me out, offer wise counsel and give support.   I know others have found the same. 

We shared some good times over a few glasses of wine. Laughter and tears of mirth and despair.  

Marcia died on 1 December, 2012.   I shall miss her greatly.